February 10, 2021KR OnlineFiction

The Orphan Disease

The first time I saw a human heart, bloody and beating, I was twenty-nine years old and living with three roommates—all of them siblings, two of them twins—in Washington Heights. I’d moved to New York for a fellowship at Columbia University. The twins, Jenna and Jessica, were medical students with dreams of a private practice back home in Gunbarrel, Colorado. But it was the brother, Alexander, an engineering student and the object of my affection, who got us access to the operating theater at New York-Presbyterian.

Before arriving in New York, I’d earned my doctorate in chemistry from a small Jewish university outside Mexico City, not far from where I was born. I was the only son of a white, quietly devout couple whose families had fled from Poland to Mexico just before the start of the Second World War. This was my first visit to America, and every evening, as I ate takeout Chinese food with a pair of blond, identical twins, I felt like an astronaut from a pulp sci-fi novel who, in the opening pages, crash-lands on an alien planet.

That night, Alexander had come home excited, his sunglasses bouncing off his head and landing in pieces on the floor. He picked up the lenses and tried to reinsert them into the frames, all while explaining the good news: we’d have front-row seats to the future of medicine—an experimental heart surgery performed using an advanced robotics system. By “we” Alexander meant himself and his sisters, but when he saw me on the couch, lounging with Jenna, he said, “You can come too.”

“Thanks,” I said. “I will.” I didn’t know anyone in the city and had no intention of turning down an invitation, no matter how half-hearted and obligatory. The roommate I’d replaced had been Alexander’s boyfriend, and I think Alexander was being cold to me to send a message: I could take the boyfriend’s room, but that’s all I’d be taking.

I’d moved in with the siblings after they posted a flier in the halls of the hospital. I’d seen them around the building, the three of them always surrounded by smiling, laughing people. When the twins called and asked to meet me, for a “preliminary interview,” I assumed I would be quickly eliminated. In Mexico, I was too white to make easy friends; at my conservative Jewish university, I was too gay; and now, at Columbia, I was too Mexican. My first week in New York, a Jewish physics professor invited me to his house for a dinner party. I arrived with kosher tacos, made from scratch with chicken liver and mole, and by the end of the night, all sixteen of them sat untouched in the pan, the sauce congealing beneath the foil. I left without introducing myself to anyone but the professor’s four-year-old son. Walking home, I thought of the evaluation a student had written after my first year as a teaching assistant: I don’t know if the TA is shy or has a medical condition, but he speaks so quietly it’s hard to even hear him.

I did not have a medical condition, but sure enough, Jenna had asked me to repeat myself when I shook her hand and reminded her of my name.

“You just moved here?” Jessica asked.

“Yes,” I said. I grew up speaking more English than Spanish—and more Hebrew than anything—so I talk with a faint but confusing accent that often results in questions.

“You’re from Mexico?” asked Jenna, her eyebrows scrunched into a skeptical V.

“And do you have any pets?” added Jessica, her face a mirror of her sister’s.

“No pets,” I said.

“Do you have a girlfriend?” Jenna asked.

“No boyfriend,” I corrected.

The twins exchanged a conspiratorial smile. Thirty minutes later, I signed the lease.

 

The day after Alexander’s announcement, we all walked together to the hospital. It was early fall, still warm. My life seemed, temporarily, just as I had imagined it: myself, doctorate in hand, walking sunlit city blocks with three very good-looking people. Along the way, Alexander explained the procedure.

The patient was a ten-year-old Haitian girl, an orphan, with a rare bleeding disorder known as Acquired von Willebrand Syndrome. If she were an American, she would have received two mechanical heart valves, but these would require care and maintenance impossible in Haiti. So instead, one valve would be replaced with another valve, and one would be repaired. The procedure had never been done before, at least not successfully. But in theory, the robotics system could work with a speed and precision impossible with human hands. The system had made national news when, during one of the many trial stages, it was used to perform an advanced, life-saving colon resection on a celebrity horse. Still, it wasn’t lost on me—the way it seemed to be on my roommates—that an experimental treatment, guided by computer code, was being tested on a foreign, dark-skinned orphan who had no other options, save death.

“But it’s going to work,” said Alexander, when I raised this objection, “so no need to feel weird about it.”

Jessica stared at her feet. “Everything is changing,” she said softly, which was so sad, so true, and so hopelessly literal that I wondered if I should apologize. The truth was that I felt a kinship with the orphan girl. I, too, had lost my parents—my mother when I was only six, to heart disease; my father, more recently, to cancer. My response to these hardships had been to bury myself in my studies, and I arrived in America as alone as a person could be.

At New York-Presbyterian, we followed Alexander to the Cardiothoracic Department and then to the operating theater. “Normally we’d have the place to ourselves,” he said, “but today it’s going to be like Lollapalooza.”

He was right. The operating theater was cramped, modest, and brightly lit, filled far beyond the maximum capacity listed on a placard near the door. The rows were a sea of white: doctors in white coats and lab coats, pressed and clean, laughing with each other and checking the time on their giant analog watches. They had ceded the front rows, Alexander explained, to reporters and bloggers and donors, who formed the true audience for the procedure. I took my seat between Jenna and Alexander, with Jessica to Alexander’s left. The twins, I’d noticed, almost never sat next to each other. They were always used as bookends.

A woman in front of me reached for something in the pocket of her coat and touched my knee. She turned and apologized. “Do you work here?” she asked. “I’m with the Times.

“Not really,” I said, which was a weird answer but a true one. My fellowship did involve the hospital, sometimes, but not in the way she meant.

To my surprise, she seemed relieved that I wasn’t part of the story; this cast me immediately, in her eyes, as an ally. “What I’m wondering,” she said, in semihushed tones, “is why we’ll spend a fortune to perform this surgery, but we can’t just let her stay in our country.”

I only nodded—feeling, as I often did, like an imposter. I tried to meet her eyes, but it was impossible not to notice the machine being fine-tuned on the floor below us, one mechanical arm of which held a large, gleaming scalpel. The machine was tall, long, and spindly—a kind of robotic octopus, but with weapons. I wondered what my father would have said had he lived to see this. During one of our final visits together, I asked him what he thought the world would look like when I was his age. I was genuinely curious to hear his take on the future—he was a physicist, a brilliant mind—but he took my question as a request for reassurance. Instead of science he gave me fantasy.

“You’ve had all the bad luck you’re going to have,” he said. “So you’re going to meet someone, a good man, and you’ll have long, healthy lives together.”

The reporter was still turned in her seat to face me.

“Maybe she’d rather go home,” I said.

The reporter pursed her lips. “Well, I’ll tell you something. I have a hospital administrator on record saying he thinks the odds of the surgery working are worse than a coin flip.”

As if on cue, the door to the operating theater opened, and the orphan arrived on a gurney. She had already been given an analgesic, and now she gazed dreamily at the ceiling, her lips parted. She blinked at the surgeon, who put his hand on her cheek and said something that made her smile. The anesthesiologist did his work, and the girl went to sleep. She looked small and pretty and weak, like a bird. As the doctor inserted her breathing tube, I remembered the morning, when I was barely five years old, that I found a baby sparrow drowned in a small puddle of rain, and in the trees, its pale-gray mother, crying from the nest.

The robotic arm of the operating machine raised its scalpel into the air, ready to begin. The surgeon in charge explained the procedure to the audience. He said the success rate for this kind of surgery typically fell between zero and five percent. The use of the robotics system, he told us, offered success rates as high as eighty or ninety percent. (Here, the reporter gave me a hard look over her shoulder, like, We know better, don’t we?) The surgeon said a team of engineers were waiting at the computer console in case the machine malfunctioned. One of those engineers I recognized as Alexander’s advisor.

I watched Alexander in my peripheral vision. He had big, brown eyes and full, elegant eyebrows. He rubbed his hands again and again on his pants to dry them.

I leaned over to him. “You’re almost as anxious as I am,” I said.

He looked at me like I’d spoken to him in Hebrew. “I’m not anxious,” he said. “I’m excited.” He turned in his seat so that his back was to me and began whispering something to Jessica.

I faced forward, my feelings bruised. All day at work I watched people flirt, and it seemed to come so naturally to them, like breathing. But even with the twin’s encouragement, I could make no headway with Alexander. What was wrong with me?

Before I could answer this question, the procedure began. The little girl lay unconscious, her arms flat at her sides. The operating machine had many hands, some delicate like a child’s—like hers—and others that looked like they could rip the door off a car. The scalpel-hand hung momentarily over the girl’s face and then dropped lower to the base of her neck. There was no noise to it; the machinery was silent. We held our breath, every one of us; I could feel the air being sucked out of the room. The mechanical arm dipped slightly—just a little nod—and the scalpel sank into the girl’s neck. Blood pooled below the Adam’s apple. So fast you could blink and miss it, the scalpel drew its red line to below the girl’s breasts. Behind the computer monitor, which we couldn’t see, the engineers were watching all of the information processed by the machine’s digital brain—they could see the machine thinking. But to my untrained eyes, there was a little girl, and there was a robot, and the robot was ripping the little girl to shreds.

The speed of that first incision was misleading. At that pace, the surgery would have been over in twenty minutes. But with the girl’s sternum exposed, the procedure slowed to a crawl. The operating machine withdrew the scalpel and brought forth a larger hand, this one equipped with an oscillating saw. The blade whirred and whined. The machine began to divide the girl’s breastbone, but every few seconds the mechanical arm pulled away and allowed the surgeon to inspect its progress. That’s how I thought of it: the machine allowed the surgeon to participate. Alexander was leaned forward in his seat, hands gripping his knees. The girl’s vital signs chirped away happily on the ECG. I felt the color drain from my face.

“Don’t worry,” Jenna whispered. “That’s how it’s supposed to look.”

But is that how it was supposed to sound? The noise of the incision was like wet paper going through a shredder. The girl’s body wept blood. The machine gathered this blood into thick gauze pads, which it deposited, one after the other, into a metallic tray at the orphan’s feet.

As the machine switched off the oscillating saw, the surgeon placed retractors to separate the two halves of the girl’s sternum. She was open now, her body was, a hole the size of an encyclopedia centered on her chest. She looked like she’d swallowed a grenade. The machine drew so close to her body it was practically on top of her, its metallic spine curved over her sleeping face. I had the flash of an image in my mind: an old watchmaker, alone in his studio, huddled over the tiny gears of the clockwork.

The scalpel-hand returned to the cavity. The machine made quick, cursive swipes, like it was signing its name. It fought its way deeper into the girl’s chest, fast and slow, slow and fast, clearing a path to her wounded heart. I knew from the way Jenna breathed, or had stopped breathing, that I was moments away from seeing that heart—beating, waiting.

And then the machine malfunctioned.

It made a kind of shuddering motion—just a small, quivering something—like a sneeze. The scalpel-hand, which had been inside the girl, pulled away like it had been stung by a wasp. As it withdrew, the scalpel threw a long line of blood across the girl’s body and onto the floor. In the audience, we gasped and covered our faces. Most of us, anyway—in front of me, the reporter scribbled furiously on her notepad, the headlines practically writing themselves. The surgeon rushed forward and began working feverishly to repair whatever damage had been done to the girl, which, based on his reaction, was considerable.

Jenna looked at me, eyes wide, her mouth a silent O of surprise.

The engineers pulled the machine away from the body. It seemed to have entered a locked-down position, with its arms raised high and pulled tight against the frame. But one of its hands, the biggest one, began to open and close, again and again, like it was working out a cramp. The frozen scalpel-hand dripped blood, the blade winking in the bright, heavy lights of the theater. As he worked to save the girl, the surgeon looked to the engineers, and one of them held up an index finger: one minute.

The surgeon and his team huddled over the girl, shouting at each other, passing instruments back and forth between them. Even before the malfunction, there had been so much more blood than I expected. I suppose I thought, with the advances in medicine, that surgery was cleaner these days, more sterile. But no. It doesn’t matter if the world’s most advanced robotics system is doing the work, or a man: when you cut open the body, it responds.

Perhaps hoping to commiserate, the reporter turned in her seat. Our eyes met. I wondered if she was thinking what I was thinking, which is that it’s so easy, the easiest thing in the world, to do nothing. Ever since I’d lost my parents, I’d just been waiting, waiting, waiting for the next round of misfortune. Now, as the girl bled out on the operating floor, everyone had finally joined me.

The reporter looked away. Below us, the giant hand of the machine had stopped flexing. Its arms returned to its sides. One of the engineers went to the doctor and said something, and the doctor nodded. The surgical team stepped back from the body, and where I expected to see a corpse, I saw, still, the orphan girl. Her vitals beeped. She was alive. The relief I felt was like a strong tide, pulling me to sea.

Alexander nudged my arm with his elbow. “Hey,” he said. “Pretty incredible, right?”

I blinked at him. I couldn’t make sense of that word, incredible, in relation to the incident unfolding below. “What?” I asked.

He put his hand on my wrist. “I’m really glad you’re here. I hope I haven’t made it seem any other way.”

I could only shake my head, and Alexander seemed to take this as confirmation of something. He smiled and squeezed my wrist.

I assumed the girl would be wheeled out of the room and allowed to recuperate. Instead, the machine was pushed back in place next to her body. Seeing this, Alexander pumped his fist, and I resisted the urge to slap him. I looked to Jenna for explanation.

“Sometimes it’s safer to just keep going,” she whispered, but she shook her head while she said it, as if she didn’t believe it herself.

Before I could argue, the machine was back at work. It seemed, almost, to move faster now, with the kind of reckless confidence that comes from narrowly avoiding disaster. And yet every second also felt like an eternity—I kept waiting for that little twitch, that mechanical sneeze. The surgeon’s blue eyes, above his mask, were so cold they were gray. You could see the fear in them. I looked around the theater and wondered who in this room, if anyone, actually knew the orphan girl. Who would mourn her the way I’d mourned my parents? My father’s death had been an expected one—he died so slowly that we came to feel a kind of impatience for it. My mother’s, though, had been more like this—a series of highs and lows. I remembered waiting for her in the hospital with my dad. Her surgery was going well, the doctor told us, and then it wasn’t, and then it really wasn’t, and then, wait, we might be in the clear. Three hours later, my father drove me home.

The machine worked and worked. It had two hands inside the girl’s chest, cutting so fast the scalpels were a blur of steel. I found myself watching through my fingers, too scared to really look, but Jenna took my wrist in her long fingers and pulled my hand from my face.

“Watch this,” she told me.

The machine lifted its arms from the body, and there it was: the human heart. Without thinking, I grabbed Alexander’s hand, and Jenna held mine. The girl’s heart pulsed anxiously within her body. It was so much less graceful than I imagined, and also much more beautiful. I looked down at my chest. My own heart! I never knew how hard it had been working. That muffled beat through a doctor’s stethoscope disguised a whole world of violent, urgent animation. It was like a baby animal waking up. My mouth opened, desperate for air. The reporter had stopped writing; her pen hung motionless over her legal pad. I had a line for her, but I kept it for myself, saved it for when I would tell my own story: the heart doesn’t beat, it writhes.

For the two hours remaining, the machine repaired her damaged heart as it rocked in place, complaining, pushing its soft flesh against the cutting instruments. With the heavy, bone-breaking aspects of the surgery complete, the entire body language of the machine began to change. The more delicate arms and hands came forward, huddled over the fragile heart. The machine cut and snipped and threaded, its fingers dancing. I could no longer follow the surgery—the procedures in play were too intricate, on too small of a scale. But the surgeon seemed pleased, and more than once I thought I saw him barely catch himself before patting the machine on the back. When the machine was finished, it raised its gleaming arms in the air—a gesture designed only to give the surgeon access to the body, but that looked unmistakably like celebration.

• •

After the surgery, the twins, Alexander, and I walked home. Along the way, the siblings chatted and laughed and recapped the night’s events. I said nothing and allowed their long legs to outpace me. Back at the apartment, we ordered takeout Chinese and drank so much wine I woke up under my bed. Three months later, the orphan would return to Haiti. In her story for the Times, the reporter would mention the earlier malfunction, but barely; all of the angry, double-underlined phrases she’d written in her notepad went unused and forgotten. Future surgeries wouldn’t always be this successful—many months later, the operating machine would fail to save a young mother with a brain hemorrhage, and her family would sue. A year after that, in the very same operating theater, the machine would malfunction and cost a young boy one of his lungs. But these failures only made the Haitian girl more important; with every setback, she’d be placed in front of a camera, across from an American reporter, and be asked to explain, just one more time, please, dear, how she owes her life to the operating machine and thanks God every day for its existence.

“Oh, yes, ma’am,” the Haitian girl would say in her pretty Caribbean lilt, her voice deepening a little as the years passed, “I thank God every day.”

I would be back in Mexico by then, having returned just as soon as my fellowship ended. Pretty incredible, right? Alex had asked, not knowing that one orphan, watching from his plush stadium seat as another bled out below him, was already empty of heart, an astronaut whose oxygen was on zero. Maybe she’d rather go home, I’d said to the reporter, not knowing I was talking about myself.

But here’s the truth of it: the night of the surgery, as we drank ourselves drunk on cheap Sauvignon blanc, I wasn’t thinking about any of that: not Alexander, not the Haitian girl, not the unjust ways the world will treat anyone it finds wounded and alone. Instead, while still conscious, I spent all of that night thinking about everyone I’d known who had died too early. I thought of my parents, of course, and in a weird way, even though I hadn’t met him and wouldn’t for many years, I thought of my husband. I thought of the life my father had promised me, before he died. I imagined the day when someone I loved more than life itself would be sick, but this time, the world would be ready for that sickness, and he would live.